MND NSW provides information, support and education for people living with motor neurone disease, their families, friends and carers in NSW, ACT, the Gold Coast and NT. We also provide information and education about motor neurone disease for health, community and residential care professionals.
The New South Wales state parliament is currently holding an inquiry into the NDIS and disability in NSW. They want to hear about peoples experience with the NDIS and we encourage people with MND to share their experiences. Whether you are having a good experience or a bad one, we all need to make sure our voices and stories are heard. The closing date for submissions is Thursday 9 August 2018. The inquiry
Researchers are currently recruiting people from QLD, SA and WA who meet the criteria for enrolment in the Study to Evaluate Efficacy, Safety and Tolerability of CK-2127107 in Patients With Amyotrophic Lateral Sclerosis (ALS) (FORTITUDE-ALS) (Trial ID NCT03160898). This is a multi-centre Phase 2 clinical trial investigating the safety, tolerability and effectiveness of a drug called reldesemtiv (also known as CK-2127107) in people with MND.
Another wonderful Walk to d'Feet MND completed, our first in Penrith and what a fantastic result. Over 400 participants and currently $30,514 raised. Thank you Penrith. What a lovely venue, fantastic atmosphere and a very enthusiastic crowd. A big thank you to Kath Cavanagh and Team Jean for their wonderful support for this event. Thanks to Rod, Murray and Milton for their great music, the Rotary Club of Penrith for the yummy food and Mel from Cafe2U for the amazing brews. Last but certainly not least a big thank you to our wonderful volunteers and to everyone who came and supported us today. See you next year, we will certainly be back.
Researchers will be recruiting 90 people across NSW, QLD, SA, WA and VIC who meet the criteria for enrolment to participate in the TEALS Study - a multi-centre Phase 2 clinical trial to investigate the safety, tolerability and effectiveness of a drug called Tecfidera in people with MND (The study to Assess the Efficacy and Safety of Tecfidera in Patients with Amyotrophic Lateral Sclerosis - TEALS, Study ID ACTRN12618000534280).
MND NSW contributes your donations towards MND research to the MND Research Institute of Australia (MNDRIA) for competitive peer reviewed grant distribution to researchers who can demonstrate the 'best' chance of finding a cure for MND, advance understanding of the causes of MND and enhance MND clinical research. You can make your donation to MND research here. For researchers, applications are now open for new MND Research Innovator Grants for 2019 and more from the MNDRIA.
Today is the beginning of MND week 2018 and this year we are pleased to announce the launch of Make Aged Care Fair – a new campaign that calls on the Government to make sure people diagnosed with motor neurone disease when aged 65 or over have access to the right care, in the right place at the right time. We need your help to make sure our decision makers listen.